Dustin Allen Smith was born on Oct 18th 1983. He was a perfectly healthy baby weighing 7lb 9oz and 21 inches long. He had very few illnesses and rarely missed school.
By all appearances, he was healthy and happy, until one day I began to notice things were changing very subtly. My first sign that something was not right was after his kindergarten booster shots. Within minutes of getting the shots he let out the most bone chilling, blood curdling scream. The screams lasted over an hour, and his doctor checked on him every few minutes, but he never sent him to a hospital to find out why.
The next sign was when he was in second grade; his doctor said he had a lazy eye. Not long after that his teacher called to let me know he was not able to see the black board with out turning his head. I again took Dustin to the doctor and he had him read an eye chart, and the doctor said he was fine. He never even checked to see if his peripheral vision was normal; but he was the doctor, I thought he knew what he was doing.
Next came the vomiting every morning. He was sick when he woke up, but fine after that. I made an appointment with a new doctor this time. As we were walking in to the appointment I remember telling Dustin to pick up his feet when he walks, I could not afford to keep buying him new shoes.
That conversation still haunts me to this day.
The new doctor was much more thorough, she checked everything and said he needed to have an MRI immediately and meet with a neurologist on the same day. I scheduled the MRI, had the scans done, waited for them to be printed, and walked them across the street to the Children’s
Dr Kaplin plopped the films up on the light board and his face went blank. You did not need to be a doctor to know that there was something terribly wrong. In the middle of the brain was a big black hole about the size of an orange. I panicked and ran out of the room and the nurse followed, she told me not to worry because as long as it was not in the brainstem (the part of the brain that controls everything from seeing, breathing, pumping your heart, etc.) the surgeons could fix him. I composed myself and returned to the room.
Dr. Kaplin apologized for not giving us warning, he said that the hospital normally calls when they find something wrong, but they did not call him this time. He then started explaining what was happening inside Dustin’s brain. The giant hole was a cyst, and the cyst developed on the tumor that was attached to his brainstem.
Now, the nurse left the room in tears, she had not seen the tumor when she talked to me earlier.
Dr. Kaplin then explained that the dragging of his feet, the lazy eyes and even the effect from the shot was all related.
Dr. Kaplin personally took Dustin by the hand and walked us across the street and admitted him to the Children’s Hospital.
Within the hour we had met with a neurosurgeon (Dr. Moss) and an oncologist (Dr. Etzel). They brought me to a room and explained to me that Dustin had approximately 3 months to live if we did not do surgery, but the surgery could leave him brain dead, brain damaged, paralyzed or he could die on the table.
No one should ever have to make a choice like that, but I chose the surgery.
I figured if he died during the operation, the doctors would have learned something that could save another child, and Dustin would not have to suffer anymore. Dr. Moss and I went to Dustin’s room and he told him that he would need to have surgery to make him better but he would be asleep during the whole thing.
Dustin looked a Dr. Moss and said; “If it will make my mom stop crying then OK”.
They started him on high doses of steroids to get as much inflammation out of his brain as possible before the surgery. They continued this for four days. Those were the hardest 4 days of my life. I did not know if they would be the last days with my only child. I would not leave the hospital room; they even had a bed in the room for me.
The surgery was scheduled for Monday morning, so we asked if we could get a leave from the hospital on Sunday. They let us sneak out for 4 hours; we went to a nearby mall, saw a movie and had his pictures taken (still with the hospital bands on). The nurses made me go home so I could be strong for Dustin on the day of the surgery, but I refused to go until my mother agreed to stay with Dustin.
I went home and broke down; I lay down in Dustin’s bed and just cried and cried.
Monday morning they started getting him ready and they asked me if I wanted his head completely shaved or just the back. All I could think was just the back because if he does not survive, I want him to look like himself. Dustin was being so strong, he did not cry until they made us leave. All I could think was, is this the last time I am going to see my precious son alive.
It was a long and grueling 11 hours, I just sat and held Dustin’s stuffed gorilla (my friend had given him the night before). I think I was totally numb, and ready to explode all at the same time.
Then Dr. Moss came out, he looked exhausted. He told me that they were able to get the entire cyst removed but they were only able to get 10% of the tumor. The said they were losing his heart rate every time they tried to remove more. He said Dustin would be in a drug induced coma for 3 days, and they would not know if he would have any deficits until he woke up. The nurse came out with Dustin a little bit later and had us follow them to the ICU. He was on full life support with lines and tubes everywhere.
How could an eight year old be put threw so much?
Once in the ICU we were asked to wait down the hall until he was moved in to his bed and they transferred all the equipment. It seemed like we were waiting for over an hour, so I called in to see what was wrong. The nurses informed me that Dustin woke up when they were moving him and they needed to know what the Dr. wanted them to do. The Dr. decided to let him wake up and if needed, they would put him back in a coma.
I was just happy to know that he woke up.
They next day was full of people coming in and out continually to check on him, nurses, therapist, Doctors, Interns, everyone. Once everyone had finished checking on him, we were able to get a final report on what was affected.
He had short term memory problems; it was hard for him to transfer short term memory to long term memory.
His balance was off. When Dustin walked unassisted he staggered as if he was dizzy, and he would need to be in a wheel chair until he relearned to walk.
Now we just had to wait for the biopsy to see what kind of cancer he had. It came back as
Pilocytic Astrocytoma, which, is a slow growth cancer that can develop cysts. When I researched it, I found that the average life expectancy was 7 years. Now we knew what we were dealing with.
The treatment was Hyperinfractionated- radiation, which means twice a day, every day, except Sunday for 8 weeks Dustin had to go in for radiation treatment. They made a mesh mask of his face, and would bolt him down to a table to ensure they hit the exact location.
The radiation came down in two beams, just above the ears, that intersected on the tumor. He had one treatment before he left the hospital and the others were after he was released. This kept us busy for the next few months. In the morning we had radiation, then to physical therapy to relearn to walk, and then lunch, then home for home schooling then back to radiation.
The days were none stop and hectic, but I had my son.
Once the radiation treatments were over and he was able to walk again, things started to get back to normal. He still had to have MRI’s every three months to monitor the cancer, but things were going good.
Dustin went back to school and I went back to work.
Things continued going well for nine more months.
Then, one of the MRI’s showed that the cyst was coming back.
Dr. Moss said he would need surgery again, but because of the heart rate problems the last time; they were not going to go after the cancer. We brought Dustin back to the hospital and went through the emotional good-byes again while they took him into the operating room. The surgery should have been about 5 hours, but it took longer and we did not know why.
When Dr. Moss came out to see us he said he got the entire cyst this time but he did not know if Dustin was going to wake up. He explained that while he was removing the cyst, the tumor was right where he could see it, and he decided to remove it as long as his heart rate stayed stable. He said, “I just kept removing the tumor and then I came out on the other side of the brain stem, this has never been done before where a tunnel was made through the stem”.
We were told they would keep him in a drug induced coma again, but he woke up first again. We were there when the nurse called Dr. Moss to let him know that he was awake and breathing on his own.
I could hear Dr. Moss’s excitement as the nurse pulled the phone away from her ear. Now we just had to wait and see if any damage had been done.
His left hand was partially paralyzed, he could use it as a helping hand, but that was about it. His left foot was partially paralyzed, but with a leg brace he would eventually be able to walk normally. His right eye wandered. A few months later, it had to be fused, so he could see up, down, and in (see his nose), but he did not have peripheral vision.
The right side of his face was paralyzed just like a stoke victim. This meant that the tumor had to be dead center in the brainstem to affect both sides individually.
We went home three days later, and the therapy started all over again. We had his hearing tested and found that he had lost some hearing, but he would not need hearing aides. So we returned to the routine of MRI’s every three months, each time my heart would drop waiting to see the results. Then it was every 6 months, then every year, then every two years. He beat the 7 years and everyone is still amazed at how well he has done.
We did have a few set backs and some more surgeries ahead.
At 16, Dustin’s hearing had deteriorated to the point where he now needed hearing aids, which are not covered by insurance and this cost $5000. The doctors explained that the radiation treatments damaged his hearing.
At 17, we went to
The surgery was in two parts. The first part, the surgeon loosened all of the ligaments in Dustin’s hand, he then took a nerve from Dustin’s leg and attached it to the normal side of Dustin’s face and ran it under his nose to the paralyzed part of his face, and he put a tiny gold weight in his eye so Dustin could open and close the eye normally. We were sent home and told to come back in 6 months when the nerve has had a chance to heal.
The second part, they removed a muscle from Dustin’s leg and implanted it on the paralyzed cheek, and then they attached the nerve.
They sent us home and said just wait for everything to heal in about 6 months, and we would start to see an improvement.
The surgery worked. It was nice being able to see a full smile on my son again.
At 24, the hearing aids needed to be replaced again. This time they were $6,000 because he worked in a casino and he needed hearing aids that would block all the background noise. He also wanted to be a singer and he was talking singing lessons. I always teased his coach about teaching a deaf kid to sing.
Little did I know how true that statement would be.
About 8 months ago Dustin woke up and could not hear out of one ear, and then about 4 month ago it happened again to the other ear.
He is now officially deaf.
He went through all the tests and found that he is a candidate for Cochlear Implants and we were ready to get started, then we found that his insurance would not pay. So for the last 4 months we were appealing the insurance but to no avail.
Dustin does not know sign or lip reading; we did not have any idea that his hearing could just disappear over night.
While Dustin is a great person with an out going personality, not being able to hear is hard for him. At first he said it was peaceful, but he knows it can be lonely.
Written by: Toni Ann Cassar (Dustin’s mother) Oct. 2010